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Submit Long COVID Drug Recommendations to RECOVER-TLC!
RECOVER TLC has opened the RECOVER-TLC Intervention Information Request Form, where you can make suggestions about which drugs and other interventions to trial!
Oct 7, 20241 min read
#MEAction UK: Postcards to Doctors for #MillionsMissing 2024
This global #MEAction initiative aims to raise awareness among medical professionals of the challenges faced by ME/CFS and emphasise the need for healthcare education about this condition.
Sep 26, 20242 min read


The RECOVER-TLC: The Path Forward
I had the privilege of attending the RECOVER-TLC kick-off meeting while Jaime Seltzer represented the needs of the ME community in a panel discussion.
Sep 26, 20244 min read


Pillow Writers Anthology, Issue 1: Near-Life Experiences Available Now!
The Pillow Writers Anthology offers selected writings by the writing group of the same name. Issue 1, Near-Life Experiences, is available now.
Sep 18, 20246 min read


#MEAction UK's email/letter to Andrew Gwynne MP
To: Andrew Gwynne, Under Secretary of State for Public Health and Prevention Subject: Treatment of Very Severe MEÂ Email:...
Sep 16, 20243 min read


#MEAction UK's annual report Oct 2022 - Oct 2023
The annual report covering what #MEAction UK has done in the year 10/2022-10/2023.
Sep 16, 20241 min read


#TeachMETreatME: We Can’t Believe These Numbers
We tallied up some numbers from our #TeachME, TreatME campaign to educate clinicians and medical students about ME, and the results are fantastic!
Sep 4, 20243 min read


#MEAction Awarded 3-Year Grant by Minnesota Department of Health Long COVID Program
#MEAction has just been awarded a 3-year grant by the Long COVID Program of the Minnesota Department of Health (MDH) to address the impacts of Long COVID, ME/CFS, and related conditions.
Jul 30, 20242 min read


Severe ME Artists Project 2024
The Severe ME Artists Project is back for 2024! Submissions are now open until July 25th.
Jun 26, 20244 min read


Pride Is Valid No Matter How One Celebrates or Experiences It
In honor of Pride Month, #MEAction is sharing a heartfelt message from our board member, Jennifer England.
Jun 25, 20242 min read


#MEAction Scotland publishes impact statement
See #MEAction Scotland's impact statement for the period between 3/2022 and 5/2023.
May 23, 20241 min read


#TeachMETreatME: Celebrating An Impactful Campaign
We are THRILLED to share the successes of our #TeachMETreatME campaign as we report back on the medical education events that have taken place so far.
May 17, 20244 min read


#MillionsMissing Week is Here: #TeachMETreatME in Action!
Learn more about our campaign, the events, & how to get involved
May 7, 20243 min read


#MEAction's Jaime Seltzer Selected for TIME100 Health 2024
#MEAction’s Jaime Seltzer has been selected for TIME100 Health 2024, TIME’s new annual list of 100 individuals who most influenced global health this year!
May 2, 20243 min read


Interview With Lauren Saikkonen - Author of Invisible Illness: Coming of Age, Chronic Illness, and a Mother's Will to Survive
#MEAction is once again thrilled to share a new book, Invisible Illness: Coming of Age, Chronic Illness, and a Mother's Will to Survive, with you by author Lauren Saikkonen! This book is an autobiography that covers Lauren’s entire life, but heavily focuses on her battle with Ehlers-Danlos syndrome, ME, and fibromyalgia. You can purchase this book on Amazon-- get a copy here! Lauren has graciously offered to donate a portion of her proceeds to #MEAction for all books purchase
Apr 29, 20243 min read


Home Test To Treat: Access Free Home Telehealth for Flu & COVID-19 Infections
#MEAction and Body Politic* are excited to collaborate with Home Test To Treat to share their critically important resource! Acute COVID-19 treatment and testing is unfortunately becoming harder and harder to access with the U.S. government public health emergency having been declared ended. The Home Test To Treat pilot program is a way to fill that gap in an accessible and equitable way. Home Test To Treat is helping to address some of the serious socioeconomic/healthcare ac
Mar 7, 20246 min read


#NotJustFatigue – Community Member Launching A New Website Today!
#MEAction is excited to announce community member, Elizabeth Ansell, created a new website, #NotJustFatigue, launching today, March 1, 2024! This website was created with the hopes it will help describe ME to those who do not know anything about ME. It is a site for people to share with their family and friends. #MEAction is listed on the website as an organization for people to support financially for ongoing research and advocacy.Elizabeth provided us with a short interview
Mar 1, 20242 min read


#MEAction's NIH Study Response
NIH’s recent paper on ME/CFS elicited strong reactions from the community. While we recognize the incredible sacrifice of the patient community who gave their health and time to make this study possible, ultimately, we caution against drawing any sweeping conclusions from this study. The paper draws conclusions based on an atypical cohort that may not be representative of the ME/CFS community, and from a very small sample size, and there are also conclusions drawn in regards
Feb 29, 20246 min read


Black ME Voices: Q&A with Teona Studemire
With it being Black History Month, it was crucial to me to make sure we spotlighted someone from the ME/CFS and Long COVID community who is Black. Being Black and disabled is an entirely different experience. Not only do we deal with ableism, but we also deal with racism, especially medical racism. According to the Journal of Women's Health, “Black women continue to experience excess mortality relative to other U.S. women, including—despite overall improvements among Black wo
Feb 26, 20244 min read


NIH ME/CFS Research Roadmap Update–Public Comment Period Now Open
The NIH ME/CFS Research Roadmap public comment period is open now with a deadline of March 8th. #MEAction is a member of the ME/CFS Research Roadmap Working Group and for the past several months we have been advocating on behalf of this community within this group. Our Executive Director, Laurie Jones, served on the nervous system committee group prior to going out on maternity leave. She helped plan the first webinar and wrote drafts of research objectives with other committ
Feb 20, 20244 min read
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